My Son Tyler was Diag. with PVL (Periventricular Leukomalacia)and I was wondering if their was any other mothers out that have a child or children that deal with this on a day to day.
I dont know much about PVL, but I did have a son in the NICU. Are you in Albany? Where are your sons? Dr Larson delivered Matthew. We pretty much lived in Portland for about a month with him, he was born at 36 weeks.
Will keep you and your boys in my prayers.
I am here if you want or need to talk.
M.
hi
i just found this site. i have twins that were preemie, too, and my son was diagnosed with pvl. he is 11 months old adjusted age now and has missed motor milestones (he rolls and is just starting to sit), but is progressing well. how is your little one doing?
My twins were also premies, they were boen at 34 weeks and they both stayed almost a month. I have never dealt with PVL, but know that the doc's will explain a lot and your kids are in the best place for their conditions.
I don't deal with pvl, but my son was born at 29 weeks with five birth defects, afecting all his major organs. He spent 9 months in the nicu then came home on a ventilator. Every day seems to get longer and longer, but the best thing you can do is to be there, as much as you can. They need you, you are still a mom, if it helps you, ask to participate in their care. My son was on life support and they still allowed me to change him, give him certain meds, feed him, even though it was through a tube, and sing to him. He's now 7, still deals with a lot of health issues, but has come so far. Also, my nicu allowed me to take a few photos, my son loves looking at them now. Good luck.
